Video report: An Obamacare odyssey for special needs family

BAY CITY — The Affordable Care Act was supposed to help families with pre-existing conditions, not hurt them. But that has not been the case for the Davert family.

Their health insurance bill has gone up 300 percent and the family is looking at taking out loans and returning to work while on disability to pay the increased costs. The Davert's experience with Obamacare is not just frustrating, it could be dangerous given the medical issues and special needs of the family.

"We have such a unique family and we've overcome many obstacles," said Ken Davert, who has cerebral palsy. "Now it's a shame that one of the obstacles we have to overcome is our own government to pay for health insurance."

Ken's wife, Melissa, and the couple's twin children have brittle bone disease and a high susceptibility to lung infections.

"Up until now, our out-of-pocket maximum has been $2,500 combined for both children, which is a lot of money but certainly doable," Melissa said. "Now we're looking at a bill of $10,200 because we can't find a plan with less than a $5,100 deductible for each of our two children."

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The Daverts have always had access to affordable health insurance. Because of their disabilities, Melissa and Ken receive insurance through Medicare. Their children, Austin and Michaela, received coverage through a private Blue Cross plan and a state program that pays for uncovered care related to the bone disease. This fall, like millions of others, the family learned that the private plan was canceled.

Immediately, they sought replacement on the federal government's health care exchange. It has been an odyssey months in the making.

They had no luck on the website. When they finally got through by phone, they spent an hour answering application questions. They then were told they would have a response one day before the deadline to sign up. Melissa was worried that would give them too little time to review their options.

That became the least of their worries.

When they heard nothing, they called on the day they were to get a response, waited 30 minutes and were disconnected, she said. They called back, waited another 30 minutes, only to be told their application was lost. They spent another hour applying again.

When they still didn't hear anything, they called again. By this time, it was right before the policies for the children were set to expire, a result of the federal health care law.

Life without insurance for children with significant disabilities was difficult to even contemplate, Melissa said. Just a few months earlier, one of the children required surgery for broken legs.

This time, the family was told that the children were ineligible to apply for insurance on the exchange. The representative could not explain why and said the family could file an appeal, which would take 90 days.

The family found policies on the private market, but no companies offered anything less expensive than a plan with a $5,100 deductible for each child. While the state plan for the children will pay the premiums and uncovered expenses related to the bone disease, it would not pay for routine care, which, for the family could be anything but routine. Several years ago, one of the children required a tonsillectomy and was in intensive care.

The family's sole income is from Social Security disability payments and they are considering loans to meet the deductible. Though limited, Ken has been able to pick up some hours to help cover the cost.

"I can only work part time with my condition," Ken said. "But I can get a couple of hours. About 20 hours a week is about all I can work. But it will certainly help in the long run."

The family is trying again to buy insurance on the exchange with an appeal. Even if they are successful, they don't think they will qualify for federal subsidies. To qualify for Medicaid in Michigan, families must be within 183 percent of the federal poverty level, less than $47,100 for a family of four. And while the “platinum” plan on the exchange offers lower deductibles, it does not cover their doctors in Ann Arbor.

"Our policy has been slaughtered by this law to where we have nothing," Melissa said. "I think they tried to make a quick fix to a very complicated problem."

Jack McHugh, senior legislative analyst with the Mackinac Center for Public Policy, said there is an achievable solution Congress could reach his year.

"The first step, and it's not that hard to do, is to eliminate many of the insurance mandates that are baked into the current Obamacare policies," McHugh said. "That doesn't necessarily mean repealing the duty of insurers to accept customers with pre-existing conditions (assuming that other changes are also made).

"It's complicated," he said, but not insolubly so.

McHugh said the current mix of insurance plans are full of "cross-subsidization," through premiums and deductibles. Policyholders must now buy gold-plated plans that must pay for everything required by the law, whether the policy holder wants the coverage or not. Forcing this on the industry triggered a massive disruption of the health insurance market, which was far greater than most politicians understood when they passed the bill, he said.

"Maybe convert those gold-plated plans to a catastrophic plan for most people, which would be more affordable," McHugh said. "Insurance companies could then increase their pool of policyholders, which improves their ability to cover claims without charging exorbitant premiums and deductibles. The law could provide a basic health care entitlement for a lot less money and with a lot less turbulence, chaos and disruption to people’s lives."

McHugh said he thinks if Congress acts this year, prices could go down within 18 months. He believes most Americans support a policy that prevents people from going into financial ruin from illness.